Table 1.
Overview of all outcome measures included in the assessment protocol: patient-reported outcome, (home) visit (physical tests and interviews), and biological and clinical factors
| Outcomes | Measurement instrument | Number of items |
|---|---|---|
| Patient-reported outcome | ||
| Quality of life | ||
| Generic | EuroQuol-5D (EQ-5D) | 6 |
| Disease-specific | European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-core 30 (EORTC QLQ-C30) | 30 |
| Tumor-specific | European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire module, Head and Neck 35 (EORTC QLQ-HN35) | 35 |
| Speech | Speech Handicap Index (SHI) | 31 |
| Swallowing | Swallowing QoL Questionnaire (SwalQoL) | 47 |
| Shoulder | Shoulder Disability Questionnaire (SDQ) | 16 |
| Hearing | Caron questionnaire on hearing | 19 |
| Malnutrition | Short Nutritional Assessment Questionnaire (SNAQ) | 4 |
| Cancer-related factors | ||
| Comorbidity | Adult comorbidity evaluation (ACE-27) | 2 |
| Personal factors | ||
| Personality | Neuroticism-Extroversion-Openness-Five factor inventory (NEO-FFI) | 60 |
| Locus of control | Pearlin and Schooler mastery scale (PSMS) | 5 |
| Coping | Mental Adjustment to Cancer scale (MAC) | 39 |
| Self-efficacy | Generalized self-efficacy scale (GES) | 10 |
| Well-being | Posttraumatic Growth Inventory (PTGI) | 21 |
| Physical appearance | Body Image Scale (BIS) | 10 |
| Life events | Brugha Questionnaire | 13 |
| Coping | Utrechtse Coping List (UCL) | 46 |
| Psychobehavioral factors | ||
| Severity anxiety/depression | Hospital Anxiety and Depression Scale (HADS) | 14 |
| Fatigue | Multidimensional Fatigue Inventory (MFI) | 20 |
| Fatigue | Fatigue Quality List (FQL) | 1 |
| Sleep quality | Pittsburgh Sleep Quality Index (PSQI) | 15 |
| Fear of recurrence | Cancer Worry Scale (CWS) | 8 |
| Cognition | Cognitive Failure Questionnaire (CFQ) | 25 |
| Physical factors | ||
| Sexual function | ||
| Males | International index of Erectile Function (IIEF) | 19 |
| Females | Female Sexual Function Index (FSFI) | 15 |
| Females | Study-specific questionnaire on fertility | 16 |
| Lifestyle-related factors | ||
| Alcohol intake | Study-specific questions | 13 |
| Alcohol dependence | Study-specific questions | 7 |
| Drug use | Study-specific questions | 7 |
| Smoking | Study-specific questions | 8 |
| Nicotine dependence | Study-specific questions | 5 |
| Physical activity | Physical Activity Scale for the Elderly (PASE) | 31 |
| Leisure | Study-specific questions | 15 |
| Social factors | ||
| Social support | Social Support List Interactions (SSL-I12) | 12 |
| Participation | Impact on Participation and Autonomy (IPA) | 43 |
| Health care use/costs | ||
| Need and use care | Study-specific questionnaire | 28 |
| Costs | Trimbos and iMTA questionnaire on Costs associated with Psychiatric illness (TiC-P): Adapted version for HNC | 30 |
| (Home) visit | ||
| Personal factors | ||
| Demographic | Standard questions | 23 |
| Socioeconomic status/literacy | Standard questions | 27 |
| Psychobehavioral factors | ||
| Presence MDD | Composite international diagnostic interview (CIDI)—Major Depressive Disorder (MDD) | Variable |
| Anxiety disorder | Composite international diagnostic interview (CIDI)—Anxiety disorders (GAD, SOC, PAN, AG) | Variable |
| Pain | Brief Pain Inventory (BPI) | 13 |
| Physical factors | ||
| Speech quality | Speech recording (perceptual and objective analyses) | n.a. |
| Pulmonary function | Peak flow | n.a. |
| Strength—upper extremity | JAMAR handgrip dynamometer | n.a. |
| Strength—lower extremity | 30s chair stand test | n.a. |
| Cardiorespiratory fitness | Chester Step test | n.a. |
| Body composition | Height, weight, body mass index, waist + hip circumference, thickness of four skin folds | n.a. |
| Blood pressure | Systolic and diastolic blood pressure | n.a. |
| Visual motor processing speed | Trail making test part A | n.a. |
| Executive functioning | Trail making test part B | n.a. |
| Activity monitoring | Accelerometer | n.a. |
| Food | 24-h recall | n.a. |
| Social factors | ||
| Loneliness | De Jong-Gierveld Loneliness Scale | 11 |
| Health care use/costs | ||
| Work productivity | Productivity and disease questionnaire (PRODISQ) | 14 |
| Biological and clinical factors | ||
| Cancer-related factors | ||
| Cancer location/stage | Standard questions, from medical record | n.a. |
| Treatment modality | Standard questions, from medical record | n.a. |
| Biological factors | ||
| Tumor markers | Tumor tissue | n.a. |
| Biomarkers | Blood | n.a. |
| General laboratory | Blood | n.a. |
| DNA | Blood | n.a. |
| Proteomics | Blood | n.a. |
| Gene expression (RNA) | Blood | n.a. |
MDD major depressive disorder, n.a. not applicable, AD generalized anxiety disorder, SOC social phobia, PAN panic disorder, AG agoraphobia